Tuesday, October 1, 2013

Disadvantages of home hemodialysis

Dialysis websites make a big deal out of the advantages of home dialysis, and indeed there are many: freedom from going to the clinic (just going and coming home takes 2 hours away each time, so 6 hours lost every week), freedom from picking up infections from other patients, freedom from loud and obnoxious patients (of which there are many), freedom from the vagaries of more or less competent/careful/friendly nurses. There's a long list of pluses.

But not much information is available on the disadvantages of home dialysis. Information brochures and websites sanitize the downside. It would be nice to have a summary of the ground reality. So here it is. Of course, this is only one person's experience.

1. ``Emergency technical support'': Technical support is supposed to be reachable (during working hours of course). Once when I called them due to an urgent problem, the technician told me he doesn't know my machine's inner workings, he'd had to find someone who does. So one hour later I get a call back. That is some emergency response time.

2. The clinic draws my blood every month, but nobody looks at the results! I had several blood values that needed new medication (phosphate binder, iron), but nobody noticed that this needed action, until several *months* later. Basically, once you are away from the clinic, nobody remembers you exist. I think that the solution is to track your own blood report, which is what I am going to do now.

3. There is a frightening book called Command and Control, about the near catastrophes that happened once the US deployed the nuclear option during the cold war years. A central takeaway point from that book is that people never do things by the book, and whenever they diverge from the specifications, there is a disaster. But people never learn. Even smart physicists, supposedly the best kind of person there is out there, are dumb about playing it by the book. Command and Control provides a lot of examples of just how dumb smart physicists can be.

This is the situation with the technicians who are supposed to maintain the dialysis equipment. I use an osmosis machine that cleans the water that is delivered to the dialysis machine; it has a filter that should be changed every three months. This has not happened, even though I've been chasing the technicians for one month now. They agree that it *should* be changed, but that it's not going to be "dramatic" if it's not changed. However, I keep getting warning messages from the osmosis machine, that it's not self-cleaning properly. The technicians think this is not a big deal. I guess that the reason they think it's not a big deal is that they are not the ones connected to the dialysis machine. One technician actually told me to contact them if the machine breaks down!!! When would the machine actually have a chance to break down? When it's working, i.e., when I am connected to the dialysis machine.

What are these guys thinking I should do? Mid-dialysis, if alarms go off suggesting that the osmosis machine is down, am I supposed to rip out my needles and saunter off into the bathroom to find out what's happening with the osmosis machine? Or should I just call them and relax and wait one hour before someone calls me back?

I finally complained to the doctor, and she forced them to come over to change the filter. The technician tried to convince me it wasn't really necessary, at the same time he told me the filter change is technically overdue. So, basically, you cannot trust the technician to do things right.

4. Someone somewhere decided to change the brand of the tubing that delivers the blood from my body to the machine and back. Nobody apparently tested these to see if they actually work. So now what's happening is that my blood coagulates inside the tubing, and this is due to a design defect with the tubes. The amazing thing is that the clinic nurses knew this was a defect, but nobody bothered to inform me. I found out the hard way. And when I went to the clinic to tell them about the coagulation, they told me, ``Yeah, sure, we know this is a problem. Just increase your heparin dose.'' Someone could have warned me as soon as they found out the problem, but no.

5. There is even more. I am on the transplant waiting list but I need to be re-evaluated every three months to stay on the list. Nobody had bothered to check if this re-evaluation was done (it wasn't).

Basically, the downside of home dialysis, at least for me, is that you are literally on your own when it comes to monitoring your health. You cannot depend on the clinic to check anything, you have to do it yourself. Of course, the catch is that you have to know what to look for. I certainly don't have any idea what I'm supposed to track.

Most of these problems are avoidable; none of these issues would arise if the clinic would do things by the book. When a blood test is done, someone is supposed to look at it. Machines should be maintained as specified in the manuals.